Friends---
I have been on the wonderful site for several years and have received (and I hope also given!) a lot of support.
My own battle begins tomorrow in earnest as I begin a 6 round chemotherapy for my lymphoma.
It's been just over a month since I found 'the lump' that sent me reeling into the Cancer Center here--I've had tests that only the clueless would agree to--and tomorrow, the die will be cast.
R-CHOP, as it is called. 1 day of infusion (the 1st is bad, so I hear) as they introduce, one by one the poisons and then dial back until I can stand it, then another one--well, I don't care too much about the mechanics--I just want the time to fly.
If all goes well and I tolerate the infusions, they make the time between then slightly shorter, so I could be done as early as Sept 1st--or who knows when, if I don't tolerate it well.
Too much time spent on the internet---people say it's the worse thing they've ever done, a lot say they scheduled infusions for Friday so they could be back at work on Monday.
And I WILL lose my hair. Oh well. I hope it grows in pure white and curly.
Dh is going to attempt to be my caregiver---but has already said he cannot stay with me tomorrow (8 hrs)...as I get the first infusion. Maybe that's for the best. He's really struggled with this--he is not a natural CG and tends to just go to bed and leave me to my own devices.
Just need words of support now this thing is real. I will be honest on this board as I might not be around others: I am absolutely terrified beyond reason.
I hope and pray I can be brave and that the IV's go in easily--and that any and all barfing makes it into the appropriate place (not DH's leather interior of his car!) I hope I can have enough 'good days' to out weigh the bad ones.
Funny, I don't worry about a cure, because we caught this so early---but that would be nice, too.
This has humbled me a lot--we always wonder why things happen to us and I am still trying to figure that out. Probably no rhyme or reason--stuff happens because we live and this is part of life.
I thank you in advance, I am already so loaded with different drugs my cognitive reasoning is not the best.
Just prayers, please and good thoughts.
I don't take it personally. I went to a funeral today for a lovely man whom we've known for 40 years. He and my DH both had liver transplants and were kind of bonded over that.
Anyway--it was my church community--and I haven't been to church for a few weeks. Some people kind of hung back and wouldn't even say hi to me, some threw their arms around me like I'd risen from the dead (not the be irreligious, but it was kind of over the top. Nice, though.)
Cancer isn't communicated by hugs or handshakes but I know a lot of people hear 'cancer' and actually ASK how long you have. I don't know. Nobody does, so that's such a dumb and thoughtless question.
I do have this 3'' scar on my neck where the dr took the biggest node out to biopsy. It doesn't look awful, but it doesn't look nice. I didn't cover it up today, just let people stare.
Dh is being kind of a jerk, so it's time for him to leave town. He is REALLY struggling with this stepping up thing. He has been home quite a lot, but unless I light a fire under him, he won't do ANYTHING on his own. Then I come across as nagging.
I don't know if he's feeling scared and unable to deal with this or just reverting immediately back to 'if DW isn't up, I don't know what to do'. He truly, truly cannot run a home. I have VERY detailed lists and I am putting a LOT less pressure on him to do anything than I maybe should. Since I don't feel AWFUL....I'm doing what I can do and that's it. I know I will get sicker, and I am holding on to that----he wants the daughters to come clean, but I feel he can keep on top of the house with just us two.
I can feel the other huge node has already shrunk quite a bit! When I am feeling kind of sickish, I feel for nodes. Knowing that the chemo is working--well, that helps me feel better.
To all my friend on AC---thanks for the prayers and thoughts and good wishes. Truly, I know this is like a river of hope flowing from earth to heaven.
I think I will enjoy a quiet week without him, when he gets back I have my 2nd infusion and he's already planning to drop me off for it and not stay. That whole infusion room, nice as it can be-still jarring to him from all his many, many stays in the hospital.
Poor DH, life is hard for him.
https://www.amazon.com/When-Things-Happen-Good-People/dp/1400034728
Best of luck on your healing journey. Sending prayers and strength to you!
That kind of thing makes it just too real.
Getting a SHORT haircut tomorrow and wig shopping with my daughters. I will do my crying at home and make tomorrow be a fun day.
I knew I'd lose my hair, I was told it would be between infusions 2-3--the nurse MEANT 2-3 weeks.
Ah well.
Still here, checking in with our friend, "Living with Cancer".
Sorry you lost your hair. You still sound cognitively intact, if you were worried about that.
Glad to hear that your daughters will be with you on the shopping trip, and you are so generous to want to make it fun.
Please also give them something to do for you, like clean. You taught them well, I expect. Allow them your trust. Pressures on dH will build over time, so you both need a little help, for a little amount of time, along this bumpy road. I know you can be gracious and receive now, because before, you were required to do it all.
Cleaning is an act of love, imo.
Nonetheless it must be a shock to have it fall out. Remember, with or without hair you are beautiful and lovable.💖💖💖
Midkid, have you been contacted, referred to, or called such a group? Real help, small kindnesses, knowledge. I am for you getting all the help you need.
I hear you about church and the varied ways people treat you, many holding back not knowing what to say, and others with an overwhelming response.
I hope that the things I say do not offend you. But I visited you here today, because you count!
Lots of hugs!!!
My hair is falling out in great swathes, Gross. My DH was out of town all week and asked me not to shave my head until he gets home. Well, he got stuck at the jobsite, and he missed his flight. If he isn't home in the next 6 hours....I will be bald.
Doesn't help that my face is swollen and my neck also. My friend came by the other day and commented that I really did look sick. In a way, that made me feel better. No amount of makeup can make me look 'ok'. I'm not comfortable with the wig yet, so I am rocking some soft caps.
Weirdly, my SCALP is so tender, That's why I could not sleep. It hurt to put any pressure on it at all.
Dh's old colleague is in town and he wants to meet up with him and his family in Park City. I am sitting here trying to manage some energy and it's not happening. He'll be unhappy if I don't go, but tears are close to th e surface and I don't want to see old friends and sit and fight tears.
My 2nd infusion is on Thursday. DH has to leave town again, so I guess I will enlist OD for a ride.
wow--the fatigue is incredible today. I hope it passes and I am a little more energetic soon. I do need to go take some brownies to a new neighbor and that's about all the 'socializing' I can do.
Just a wah-wah pity party. I'm fine, just tired!
Just here to let you know I’m thinking about you.
You are so kind and brave to share your journey with us.
Please let others help you and don’t feel bad about it.
Please don’t let others (DH) expect too much from you and don’t feel bad about it.
(((Hugs)))
My daughter and son in law just closed on a house in Park City.
Hear you.
You are still making sense.
Do not allow others to put social pressures on you right now.
There is enuff on your plate.
Get through today, even if going back to bed to find the rest you need.
Just be kind to yourself. Wishing you all the best.
I'm remembering your telling us about all the days he lay in bed doing nothing. And he's going to be unhappy if YOU need to rest in the midst of grueling chemotherapy???!!!
Yeah, the irony is not lost on me.
He will 'take a day off to take care of me' and sleep for 24 hours. I cook and he gets up ti eat then back to bed, 'Taking care of me' is limited to me laying on his bed watching a movie he chooses. He just. can't.
He got stuck on a jobsite and didn't come home yesterday. Supposedly today and he wants to hike with friends tomorrow---but I am not going. I'd sit and have a lovely lunch in a little sidewalk café, but I cannot walk more than a mile and we'd be up about 10,000 feet in altitude . He will push me, I know. But I think when he walks in and sees that I am now 90% bald, and I LOOK sick, he may cut me some slack. We'll see how it goes. He does get a little upset with me--'I try to take you places and you never want to go!' Well, usually there is zero planning and I get sooooo nauseated on drives. Even not on chemo, he's a race car driver. I know that's HIS happy--it's just not mine.
When he finally connected with the friend I heard him say "Buffy has cancer, I wasn't upfront with you." I could hear his friend saying "Oh my gosh! And she feels like hiking?" He did start the laundry and didn't argue with me about paying a neighbor kid to mow the lawn.
He finally left about 2 and I will be in bed before he's home. Oh, and he has to go right back to the jobsite he just left! Why in the world did he come home for 36 hrs? He needed his laundry done, I guess. If he had stayed he could have gone to my 2nd infusion on Thursday. Now I have to get a daughter to come fetch me. No big deal. It's a BREAK for them!. Hopefully it won't be worse than last time and I didn't need him at all. I cannot figure this guy out. I had a couple tears about the hair (what woman wouldn't ?) and he said "You have GOT to get over this".
SMH.
I am actually glad he won't be back home until after the prednisone rage. It wasn't too awful last time, but I will be better if I do not have to deal with him.
I don't want this to be a rant about my half hearted DH's help. He truly is doing the best he can. He was just raised to be fussed and coddled and I have continued that for 43 years. We're doing a 180 in our marriage dynamic and it's hard. I am going to get the SW this week and find us a marriage counselor to help out.
SUPER fatigued. Read about all the s/e....such weird ones. Burning scalp, bleeding gums, swollen gums, loose teeth--sheesh...nobody would sign up for this if they knew all the possibilities
I DID take a 'babychick hair' pic for our family group me and the kids were all so sweet. Then I added a couple with the wig and that made us all feel better.
Sure am grateful for central AC. Wow, is it miserable today!
I agree it's not fair to blame DH for how he is, no. But neither do you have to carry him, not for the time being. Be how you need to be and let him cope as best he can.
Love you xxx
Hugs!!
In all of this, you are being kind and generous to your hubs.
You have already won the biggest battle with your attitude.
Feel free to share these moments with us, who surely know
and understand how it can go with hubs in general.
You are Grace under fire.
Let it all out here.
Love,
From Send
Just know you have a whole army of well-wishers here on this forum who are thinking of you and sending love and support every day!
While he was gone I simply buzzed the rest of my head. One you get used to it, well, it is what it is. Better than having swathes of thin hair all over the house.
For a while there I looked like "Gollum" for LOTR. NOT a good look. I kept saying "My preciousssss" all day and cracked myself up. Too bad nobody was here to appreciate my bad impression.
Dh was up, packed and out the door for a week long trip by 5 am. I know it sounds absolutely heartless, but if he didn't go fix this problem, United Airlines would have had to ground 1/2 of their fleet. He did ask me what he should do and the answer is pretty much always "deal with work". He came down to say goodbye to me (I was awake and reading at 5:30 and he apologized for pushing me so hard yesterday. I said it was ok, fly safe and save UA!) There's nothing to be gained by chewing him out for being insensitive. He'll have learned by the end of this, I'm sure. He did get a kid to mow the lawn, he got some of the laundry done and he made his own bed (sort of). Baby Steps.
On the very plus side, he is working so much OT, it more than makes up for what I make at some PT job.
2nd infusion in 2 days. I am going alone, and OD is coming to get me afterwards. I will probably enjoy the relative peace and quiet. Fingers crossed that it's no worse than the first one.
I cannot begin to thank you all (and many others) for the constant stream of prayers that are going up in my behalf. Every day is a day closer to being cured.)
Do you get to choose the music you listen to while you are seated in the Throne of Infusion? If you have a minute before you go, tell us what you’ve selected (or WOULD select if you could choose for yourself).
If you print your music selections I will listen to what you have chosen while you are receiving your infusion, and by doing so, will have yet another channel through which to share with you my hopes and comfort.
We CARE about what is happening to you. Daydream, place yourself in a state of peace, open yourself to the healing properties of your medication and the skill of your doctors.
Every day is INDEED closer to healing and cure. Please report when you feel up to it. SOON, the 2nd infusion will be behind you and you will be a step closer to being 1/2 way through!
Did nurses have any recommendations for the scalp - Aloe Vera or something ?
When you get home from chemo, just wanted you to know someone was here to check on you today.
Ms.Madge is right, rest and hydrate.
Caring about you, hoping you will not be alone for long.
Thinking of you lots. Jenny across the street is s/p 6 years after her lymphoma treatments. Still walks a lot UPHILL. Feels great. I am 31 years s/p breast cancer and chemo, the bad estrogen negative kind with spread to two lymph nodes (which is where I found it and why initially they said maybe lymphoma).
Your humor is gonna be worth a whole mess of chemo to tell you the truth. I always found humor in it even if I was busy planning for my funeral! I learned a whole lot about what is good in life, which is just about everything if you can just keep healthy enough to deal with it all. Even your kids fighting looks pretty good. I didn't let people give me that old "think positive" bunk. To me, that is putting the burden for our cure directly on us; hey, wait, WE are the victims, not the ones responsible for our own cure. I will think whatever I want any day I want, and thank you very much. I did crazy nutsy things like playing solitaire and pretending how many cards I got up there was how many years I had to live. I would get zero up and say "This is just a stupid game". I would get 52 up and say "I can't live THAT long even WITHOUT cancer". I would get five up and say "Oh. Pretty good. Five. I can live with that." For about 1 year everything meant the cancer was back. Headache? It's back. Shins hurt?(they forgot to tell me the chemo would make my bones ache so I got pretty convinced it was then in my bones). It's back. Diarrhea? It's back. Step the wrong way? It's back and now my brain is gone, too. Year two it was less bad. Fewer fear bouts. Yeah three I forgot to be scared and even THAT was scary. Now I never think about it much at all and having another dx. at 77 would make me go through the whole nutty thing all over again. You can do this. You do it however you want to do it. Because trust me, EVERYONE OUT THERE will have THE ANSWER on how you should do it. Hee, that's part of the fun! They will drive you batty. But soon you will beat it and then you can drive THEM nutty with how they should do it. Keep posting. We are in your corner.